January 14, 2010

Disability and Disease

He presses back against those who have an overly simplified expectation of "cures" for disabilities. A key point he makes is:

But there are two important points being elided totally ignored here. The first is that we need to understand that disability cannot be collapsed into disease, and disease is not synonymous with disability.
Some diseases are disabling, yes; others are potentially disabling
(diabetes, Graves, Hashimoto’s thyroiditis) but can be palliated with
medication. And most disabilities have no disease etiologies
whatsoever. Applying the cure/disease model to those disabilities is a
category error, and fundamentally mucks up our thinking about how to accommodate disability in society as best we can.

I would push further and argue that we must also be open to acceptance. Complete acceptance. That is, to look at a disabled person and see that his or her life is not somehow broken or incomplete but, rather, full and integral unto itself. This was the central theme of my book, Aidan's Way. It was also what I was trying to get across in an NYT op-ed I wrote over eleven years ago. The title I wanted for that op-ed was "Against Productivity," because my central assertion was that instrumentalist standards of "productivity" and utility by their very nature devalue and constrict the lives of disabled people. The editors gave it another title, one that subverted the message: "Productive in his own way."

These lines from Zhuangzi capture my feelings:

...the real is originally there in
things, and the sufficient is originally there in things. There's
nothing that is not real, and nothing that is not sufficient.
Hence, the blade of grass and the pillar, the leper and the ravishing
beauty, the noble, the sniveling, the disingenuous, the strange - it
Tao they all move as one and the same. In difference is the whole; in
wholeness is the broken. Once they are neither whole nor broken, all
things move freely as one and the same again. (23)

Each thing has its place in Way, and no one thing is superior to another. Each is complete in and of itself...

Berube is fighting a more practical battle, for social and physical accommodation for people with disability. And I agree. Because it is precisely through accommodation that we would enable people to express the fullness of their being and, in doing so, we would see more clearly the value in disability.